By Debra Reilly, PT, DPT

Physical Therapist, New York

Earlier this summer, we observed Aphasia Awareness Month in June. As the year continues, it’s essential for clinicians to stay mindful of the ongoing impact aphasia has on both patients and their caregivers.

What is Aphasia?

According to the National Aphasia Association, more than 2 million people have aphasia. Aphasia is more common than Parkinson’s disease, cerebral palsy, or muscular dystrophy. Aphasia is a communication impairment that results from an injury to the brain. The most common causes of aphasia are stroke and traumatic brain injury. Frontotemporal dementia can also cause aphasia.

Notably, Bruce Willis was diagnosed with aphasia due to dementia in the Spring of 2022. While the announcement of his condition has helped bring a better understanding of what aphasia is and how it can impact a person’s daily life, one of the biggest challenges for clinicians and caregivers is that no two patients with aphasia will have the same clinical presentation.

How Does Aphasia Affect Patients?

Patients with aphasia have an often misunderstood communication disorder that affects a person’s intellect.

Expressive aphasia affects a patient’s ability to use the correct words in either writing or speaking to explain their thoughts. A person with expressive aphasia knows the correct word they want to use, but cannot produce that word. Receptive aphasia affects a person’s understanding of what is being said or what they are reading.

Aphasia affects every aspect of a patient’s ability to communicate, including but not limited to tasks like speaking, writing, or reading their own name. Imagine going to your doctor appointments and not being able to answer what your name and date of birth are. Simple tasks like reading or sending text messages are now nearly impossible.

People with aphasia struggle in all daily tasks, from ordering a cup of coffee, telling someone how they feel, and engaging in conversations with friends and loved ones. Aphasia is also an isolating disability where many people find friends become distant as they do not know how to communicate with someone with aphasia.

How Does Aphasia Affect Caregivers?

When someone suddenly loses the ability to communicate, the effects are devastating not only for them but also for their caregivers and loved ones.

My husband had a stroke in February of 2020. He told my daughter every night before bed to brush her teeth. On that random Wednesday night, he could not produce those words. The first time we thought he was joking. By the third time when no words came out, we realized we had a problem. And just as suddenly, I became not only a wife and a mom but now was thrust into the role of caregiver, advocate, and mind reader. But I was not the only one in our house whose life changed.

Our children who were ages 7 and 20 at the time now had to learn how to communicate with their dad and to understand that he was still the same silly, funny person they always knew. I remember driving my husband home from the hospital while he tried his hardest to tell me where to go and what he wanted. I had no clue until he pulled on the steering wheel and pointed me in the direction of the nearest Dunkin. All he wanted was a simple cup of coffee!

How to Care For Someone with Aphasia

Since aphasia affects each person differently, there is no single way to help someone with aphasia. Over the past 3 years, I have learned some strategies to help communicate with my husband.

Patience is Key

The very first thing I realized was how important it is to be patient, allowing for extra time when communicating with my husband. Conversations that would normally only take a minute or two before his stroke now take a whole lot more time and more concentration for both of us.

You also need to ask if help is needed when a person with aphasia is trying to get their point across. Don’t assume they want help. Ask yes/no questions. Have a conversation in a quiet room without distraction. Mute the TV and put your cell phone down so you can be totally aware of verbal and nonverbal cues being provided. Provide choices, but limit the choices to two. For example: “Do you want your eggs fried or scrambled?”

Don’t Rely on Talking Alone

You can also find other ways besides words to communicate. I often ask my husband if he can show me what he is trying to explain. We have also put messages in his phone that he can now access, including how he likes his coffee, some of his favorite things to order at the deli, and who to contact if there is an emergency. Being able to give someone a message to read reduces a lot of his stress.

You Are Your Patient’s or Loved One’s Voice

Finally, the most important thing a caregiver can do is advocate for their loved one. Explain what aphasia is to others and how to have a successful conversation with your loved one or patient.

I have done this with my in-laws, the counter guy at the deli my husband always goes to, his doctors, and his friends. Explaining brings awareness and understanding which allows someone with aphasia to feel less isolated.

People with aphasia want to have normal conversations like they did before aphasia took over their lives. About a year after his stroke, my husband and I went out to dinner. He had regained the ability to say some words and short sentences. A couple sat at a table next to us laughing and talking. My husband told me “I just want to talk like them again.”

Online Resources for Caregivers

The Aphasia Recovery Connection offers online support groups, classes, and activities to learn how to communicate with a person who has aphasia. Their Facebook, Instagram, and YouTube accounts post helpful tips that can be applied to almost every situation facing someone with aphasia or their caregiver.

This forum allows caregivers to meet with others who are experiencing similar challenges and grieving a similar loss. Many caregivers lose focus on caring for themselves as they become overwhelmed with the daily needs of their significant other and the frustration that aphasia adds to simple tasks. I have found connecting with people who are in a similar situation to be very helpful.